Update on Madilyn's Recovery - please keep her in your prayers...

Hey guys, it's been a couple of weeks since we updated you all, so I wanted to let you know how Madilyn is doing, and how you can keep praying for her.

Last week, I read Psalm 103, the day after we learned that Madilyn's kidneys were still recovering:

Bless the Lord, O my soul,    and all that is within me,    bless his holy name!2 Bless the Lord, O my soul,    and forget not all his benefits,3 who forgives all your iniquity,    who heals all your diseases,

In the Psalm, David describes the way he feels, as though he was a new man and his youth had been restored.  After 7 days of waiting and wondering, when we learned that Madilyn's kidneys were above 50%, and that she was still healing...that's exactly how I felt.  Like a new man.  I'm so thankful for the good news, but I'm also praying for God to strengthen my faith throughout this process, and to allow me to feel confident in Him, even when the news isn't good.

How is she doing?

Over the past two weeks, Madilyn has continued to improve.  Her last blood test was on Friday, and her Creatinine level has come down to .7 which shows us that she is still improving.  This Wednesday marks the 5th week that she has been out of the hospital, and from what we've seen from the other moms who have had kids with HUS, usually it takes a month or more for them to get back to normal.

We are praying that her Creatinine continues to drop down to .5 because that would show her kidneys are at 100%.

Madilyn has been enjoying school for the last week or so, and even went back to her class at church this Sunday.  She was very happy to be back, and her friends in class were super excited to see her.


Here are the things we need you to pray for:

1. Pray for Creatinine level of 0.5!!! Her next blood draw will be in two weeks, so we would love to see that .5 next time she goes in for blood work.
2. Pray for her Potassium count to improve.  She is still taking a medicine called Kayexalate to keep her potassium down, but she is able to take a much smaller dose.  We hope she'll be able to stop taking that medicine soon.
3. Pray for her Red Blood Cell count to improve.  As her kidneys heal, pray for Madilyn to get back to a normal red blood cell level.
4. Pray for her blood pressure to improve.  Madilyn is taking a medicine right now to keep her blood pressure at normal, but we are praying we can eliminate that medicine after this two weeks.

Thank you again for praying, please keep it up!! 

Here's a couple pictures of Madilyn and her brothers goofing around...love these silly monkeys!!

For His Glory,

The Rascos

  

Awesome news and huge answer to our prayers!!!

Today we took Madilyn for a follow-up at Dell Children's.  They did blood work to check her levels and see how her Kidneys have been healing.

The great news is that her Creatinine is down to .8!!!  We were praying for anything below 1.0, so we are pumped about this news.  What this means is that she has jumped up from 40% kidney function to somewhere in the neighborhood of 70%.

Today we are celebrating and thanking the Lord for how she is healing.  Tomorrow we will meet with her kidney specialist to determine what medicines she needs to keep taking and how much, but we are so excited to see her kidneys are healing!!

Thank you so much for praying, it means a ton to our family.

For His Glory,

The Rascos

  

Wednesday Update on Madilyn's recovery

Hey guys, here's an update about Madilyn's last check-up so that you know how to pray for her and us going forward.

Today as I was studying in Isaiah 42 and 43, I read this passage that really comforted me and reminded me who has been with us during the last month. Listen to the word of the Lord given through Isaiah in 43:1&2  

Fear not, for I have redeemed you; I have called you by name, you are mine. 2 When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.

There were a couple things that stood out to me from this passage.  First, it was God who allowed the nation of Judah to go through the trial they were in.  Second, God promised them that He would be with them throughout the trial.  Whatever they were going through, God was going to help them!  This is a promise that we are clinging to right now - God, whatever happens from here, we are dependent upon you, we are trusting that you'll be with us through it all.

How is she doing?

We had some tough news on Monday when the doctor looked at Madilyn's blood work.  Unfortunately, her Creatinine level did not decrease from last week, so it was still stuck at 1.1. We are praying that it will go down until it reaches the normal level of .5.  The fact that it's stuck at 1.1 is disconcerting, since that represents about 40% of normal kidney function.  Basically, if the level stays here Madilyn will need serious medications and hormones throughout her life.

The good news is, our Doctor looked at the results and said that he thinks the blood test was skewed.  Madilyn was so nervous about the blood draw that she didn't eat or drink much at all that morning.  This meant that the water level in her blood was lower than it should have been, and he could see that in her results.  So, he thinks that her creatinine may actually be down a little more from last week, but we just don't have the test results to show that.

Also, when Madilyn went to school last week she promptly picked up a cold...she came home on Friday with a runny nose and low grade fever.  We think this also contributed to her not wanting to eat or drink over the past few days.  So, this week we decided to keep her home, and Granby had to come back and help watch Madilyn during the day so that Jennifer and I can work.

Here are the things we need you to pray for:

1. We need you to keep on praying for her kidneys to come back to full strength, pray for no long-term damage!  Pray for Creatinine level of 0.5!!!  (Scott Frazier reminded me this week that we need to pray for this until God changes our prayer, so please keep it up)
2. Pray for her appetite to pick back up as she gets well from her cold - we need her to eat and drink well to help in the healing process.
3. Pray for our nerves as we wait for the next blood test.  My biggest temptation is to worry about all that could happen, but that's not helpful, and it's actually sinful (Matthew 6:34). Pray that we draw closer to the Lord for help with the things we cannot control! 

Thank you again for praying, please keep it up!! 

This pic is from last Friday night when we all went to see Round Rock take on Smithson Valley.  Sorry San Antonio friends, the Dragons Rocked them!!

For His Glory,

The Rascos

  

Hey guys, we had a busy week last week, and we forgot to update the blog with Madilyn's news.  Here's a quick Monday post, and we'd love for you to pray for her today.

How is she doing?

We have had Madilyn home for almost two weeks now, and she has been doing really well.  
When we first brought her home we had to take her in every other day for blood work.  This was not fun for her at all.  After being in the hospital for a month, Madilyn is not happy about seeing Doctors, and especially about having blood drawn.

Madilyn's potassium level has been the main thing we've been watching, even though she's on a low potassium diet.  Since coming home, she has been on a medicine called Kayaxelate to control potassium.  It's a pretty gross medicine, and she has to take 40ml of it (not bad for an adult, but Madilyn hates it).

You can tell by the picture below that Madilyn's color is still quite not right.  This is due to the anemia, she'll also be anemic for a while as her kidneys recover (kidneys are in control of how many red blood cells you produce).

Last week, Madilyn was able to go to Pre-school.  She was so ready to go and meet her teacher and new friends.



Here are the things we need you to pray for:

1. Pray for Madilyn's kidney function to keep improving...Madilyn's kidneys have improved from 20% when we left the hospital, to 40% at her last visit.  Some of the other HUS moms have told Jennifer that this part of recovery could take around a month.
2. Today we are taking Madilyn into the lab to draw blood and check her levels.  Please pray for her to not be afraid, and for it to go smoothly.  Also, we are praying that her levels have improved to 80% today!
3. Keep praying for our family as we wait to see where she will end up. There is nothing we can do but wait and see, so pray for God to give us peace while we wait. 

Thank you again for praying, please keep it up!! 

For His Glory,

The Rascos

  

We finally brought her home!!

Hey guys, I wanted to send out a quick post about how Madilyn is doing since we came home, and I would like to ask for continued prayer for her.

How is she doing?

First off, the great news is that we were able to bring her home on Tuesday afternoon.  All her labs came back good, and we were able to pack up our hospital room and bring her home!!



This is Madilyn's first nurse, who also happened to be her last nurse!  Thank you Nurse Kim, and all the other amazing people who took care of her for the past month.





Now the recovery continues at home, and we could really use your prayer for the next few weeks and months as she heals.  We are finding out more and more about the kidneys, and we've learned that they are an interesting organ that is very difficult to predict.

Here are the things we need you to pray for:

1. Pray for Madilyn's kidney function to keep improving...Madilyn's kidneys are filtering at just over 20% right now.  This number has been going up steadily, and we want that to keep improving until it gets to 100% or very very close!
2. We now have to take Madilyn into the lab to draw blood every other day...this is very traumatic for her, and she does not like it.  Please pray for us to endure, and to be able to help her have peace about this and ease her pain.
3. Keep praying for our family as we wait to see where she will end up. There is nothing we can do but wait and see, so pray for God to give us peace while we wait. 

Thank you again for praying, please keep it up!! 

Quote of the day - when we brought her home, Madilyn must have said 10 times "I'm so glad to be home"...usually that was followed by a hug and I Love You.

For His Glory,

The Rascos

  

Monday update for Madilyn...almost ready to go!!

Hey guys, I'm happy to post some more good news about Madilyn, and ask for your prayers for her continued recovery.

Yesterday I was able to go to church for the first time in about 6 weeks...it was great to be back with my church family, and to Worship Christ together.  Before the service I spent some time studying Isaiah 41 again.  The passage that stood out to me was this one from verse 20: 

20 that they may see and know,    may consider and understand together,that the hand of the Lord has done this,    the Holy One of Israel has created it.

Isaiah has been comforting the people by reminding them of God's sovereignty and provision.  In this passage, God tells the people exactly how He will provide for them.  He will make streams rise up in dry lands, He will make gardens grow in desert places, He will show up in power to provide for them...so that all will see and know that it was the Lord's hand that was behind it all. This was my prayer on Sunday and today...that God would heal Madilyn completely, and that we will see His hand working throughout the process.

How is she doing?

Madilyn's blood work continues to improve each day.  Today her Creatinine level was down to 2.2 and has been steadily declining over the past few days.  We pray that it keeps going down every morning until it reaches the normal level of .5.

We woke up this morning and headed to the operating room to remove her Perma Cath for dialysis...everything went great and she now has one less piece of plastic in her body.

Tomorrow morning they will check her labs one more time, and as long as her potassium levels are in the normal range we will be headed home!!  After 28 days of being here, we are ready to get up and get out of here.




Here are the things we need you to pray for:

1. The rest of Madilyn's recovery will be at home, but we need you to keep on praying for her kidneys to come back to full strength, pray for no long-term damage!  Pray for Creatinine level of 0.5!!!
2. We will also be treating her blood pressure at home for a while, until her kidneys can regulate it on their own.
3. Pray for her to eat and drink well while she's at home to help in the healing process.
4. Currently, Madilyn's kidneys are filtering at 20% function.  This number has been going up steadily, and we want that to keep improving until it gets to 100% or very very close!
5. Pray for our nerves as we wait to see where she will end up. There is nothing we can do but wait and see, so pray for God to give us peace while we wait. 

Thank you again for praying, please keep it up!! 

This pic is from the last night of playtime with her brothers after supper...it has always been her favorite part of the day - when they come distract her and play with her.  We are so thankful for how strong and helpful these guys have been!!

For His Glory,

The Rascos

  

Update for Friday...Keeping up the good work

Hey guys, I wanted to post a quick update today and ask for prayer for over the weekend.

How is she doing?

Madilyn's blood work continues to improve, which gives us great hope that her kidneys will be able to return to normal.  She has not needed any dialysis since last Friday, and if things keep going the way they have been, she will not need it anymore!

Right now we are patiently (sometimes impatiently) waiting to see if Madilyn's Creatinine level will get down to normal.  This will be the sign that her kidneys have little to no long term damage.  Earlier this week, her level was 5.7, then it dropped to 5.1, yesterday it dropped to 4.0, and today it dropped again to 3.4.  

Last time I posted, Jennifer and I thought that her doctor said 4.0 was normal for Madilyn, but that was incorrect.  Normal for her size and age would be around 0.5...so we still have a long way to go, but we are praying it just keeps going down.

This can make our mornings a little stressful while we wait for the results to come back. Of course Madilyn isn't stressed about that at all...





Here are the things we need you to pray for:

1. Keep praying for Madilyn's kidney to come back to full strength, pray for no long-term damage!  Pray for Creatinine level of 0.5!!!
2. This weekend they are working on her medication for blood pressure, trying to get it under control so that she can go home.
3. Monday at 9:00AM Madilyn will have her surgery to remove the catheter.  Pray for her to be relaxed and the procedure to go great.
4. After the surgery, we should be able to take her home on Tuesday or Wednesday, and we are so ready!

Thank you again for praying, please keep it up!! 

For His Glory,

The Rascos